How is the healthcare debate impacting the chronically ill and disabled community

I just sat down to write this with a dramatic sigh. I’ve been working on this post for too long, and it’s simply an introduction to the survey I’m conducting for a future post I’m hoping to write. Still, every time I start writing some new aspect of the healthcare debate develops, a new headline warning me I might lose access to treatment. As I write this, a group of Republicans in the Senate are working on a bill in secret in an attempt to use a procedural trick to pass a bill without anyone to see its contents. Now, I don’t know about you, but I have trouble thinking anyone would feel comfortable having 13 men meet in secret to decide their future with no questions asked. The idea is frightening.

So I sit here listening to Senate Democrats hold the floor, reading emails and relaying stories from their constituents whose lives depend on the services in question. I switch back and forth between C-SPAN and cable news only finding talk of what so many of us have to lose. How much care will be allowed to before lifetime Medicaid limits cut us off? I hear how those struggling with high premiums and copays need help but won’t be. It goes on and on, and It makes me anxious. Every day, for months now, we’ve heard this back and forth: the system is collapsing, millions will lose care. We listen to rhetoric fraught with threatening words and fear inspiring statements on both ends of the spectrum. All directed at a population already struggling to fulfill one of their basic needs as a human being, the ability to stay alive and stay as healthy as possible. It’s like a tennis match, and we are the tennis ball.

I certainly feel like I’m the ball in a never ending tennis match and that’s on top of my chronic illnesses. I hear the words healthcare, and I get stressed, I start to worry, and I feel it throughout my body. According to this monitor in wearing, my heart rate is well above average right now. I can verify my breathing is shallow and I’m stopping to take deep breaths now and then. I am having a visceral reaction to this debate and its worsening day by day. I laugh a little when I think about how regularly I’m told to ‘avoid stress’! It’s bad for my illness. Avoiding stress is not easy in general but right now? REALLY DIFFICULT.

So as this started happening to me I started thinking, am I alone? How are my fellow chronically ill/ disabled folks and their friends and family dealing with this ongoing debate? My brain started a bit of a logic chain. Considering the World Health Organization’s measures for quality of life include a dedicated section to self-reported satisfaction with access to healthcare services, it seems reasonable to assume that access to care can impact someone’s overall well-being. That said, it also seems logical to assume that the threat of losing access in some way would negatively impact. well-being. This seems like a reasonable logic chain, yes?

The scientist in me won’t say “yes, that’s clear.” A logic chain needs supporting data to confirm its validity, and there’s no publicly available data out there for me analyze. I have my ever increasing weariness and other data I’ve collected on myself, but I can’t generalize from that. So it occurred to me I should do something unheard of (read that sarcastically), I realized I should just ask.

I mean, I have heard a lot about wellbeing and access and lives, but I haven’t heard anyone ask us, the community whose lives depend on healthcare access and those who care about us, are feeling about all this. Are we doing ok? Are we feeling more or less secure in our ability to access the healthcare we need? Are we worried, scared, stressed? Do we feel our voices are being heard? That’s a lot and not something I can get ahold of in a single, short, non-academically, supported survey, but I can try to get an idea. I can at least ask. Why hasn’t anyone asked? The impact of stress on chronic illnesses is no secret, seems like a relevant topic to explore.

So I’ve created a survey, and I hope you’ll take a moment to fill it out and share it with those around you. No, this is not the highest-quality survey of the entire population that will lend itself to academic papers and the like, but I have called on a few tools I held on to from my previous life in research and academics to put it together. My hope is that it will shed light on questions that should be asked. That it might inspire discussion and if it inspires someone with access and influence to gather further information on the topic, even better!